Rare Disease Day

Today, Benjamin received his first pair of big boy braces. What could be tougher than black braces with skulls and bones. 🙂

Tomorrow, we dress in blue and blue jean for Rare Disease Day. So too often, the rare diseases lack public attention and funding. They are so close to a treatment for Myotubular Myopathy, and only lack funding and time. Please donate to The Joshua Frase Foundation or Where There’s A Will There’s a Cure in honor of Rare Disease Day.

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“Mountain Top Experiences”

In the Homily in Mass Saturday, Father John talked out “Mountain Top Experiences.” Everyone has had them, but not everyone has taken the time to realize that they have. (The Homily was probably the only time Lennon and Isla were still and quiet during Mass.) A “Mountain Top Experience” is when you have had one on one contact with Jesus through your good works with another person. It is when you can look through someone’s eyes and realize you are not only helping that person, but you are also working with Jesus. “And the King will say to them in reply, ‘Amen, I say to you, whatever you did for one of these least brothers of mine, you did for me.'” Mathew 25:40. I can’t even count the number of “Mountain Top Experiences” I have had with not only Benjamin, but also with all the amazing kiddos I have worked with in the past. Some moments stand out more than others, but there is no time I feel closer to God then when I am with children.

Something that Father John didn’t mention, but that comes to my mind when discussing “Mountain Top Experiences,” is when you are on the receiving end and see Jesus through the eyes of the one who is generously lending a helping hand. It is not coincidental when you receive a call or a visit from someone just when you need it. We have been so blessed to have such a wonderful group of friends and family that have been there to “walk with us” in this journey. Last week, in the middle of a potential “melt down” situation, a friend was here, lending a hand (and washing dishes). 🙂 It wasn’t a coincidence that she was here, God had a hand in it. He worked through her, and thank goodness that he did. We all have our ups and downs, but being there for each other, can make the rough patches of our journey so much easier…even enjoyable.

My new bracelet… such a special gift.

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The Smart Vest

Benjamin received another new piece of equipment Friday…The Smart Vest. (Between Benjamin’s equipment and the new Barbi obsession in our house, we our pushing the boundaries of our small house.) This machine helps loosen up the mucus in his lungs so we can suction it out. It mimics a cough, and since Benjamin’s coughs are very weak, this machine is a necessity. Immediately after the machine started, Benjamin had a huge smile on his face and he started patting the belt. Even though his entire body shakes, he loves it. The respiratory therapist with the company said she rarely gets a reaction like this. Benjamin, being such a boy, loves a little roughhousing (as much as we can while protecting limbs), and this machine gives him a little of that.

Therapy continues to go really well, and we continue to see progress with his head control and with his voice production. He can now let us know when he is a little uncomfortable, and wants to be adjusted or moved. If he lays in one position too long, he will start cooing loud enough for you to hear him. As soon as you adjust him, he stops. Huge accomplishment.

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Heaven

Saturday, we decided to go to Mass in the afternoon, allowing a lazy Sunday morning with no plans or schedule. Unfortunately, we were a little late and a little underdressed, but most importantly, we were there. If we don’t already attract enough attention coming in late with a large wheelchair carrying its own motor, Lennon was very inquisitive on this day, and not very quiet. First off, Father prayed for someone with the first name Dorothy. Just when you think they do not pay attention, Lennon announces “he just said Dorothy” (Wizard of Oz). I really didn’t try to convince her otherwise.

Later on, the word “Heaven” was mentioned. Lennon looked at me with such concern and said, “I don’t want to go to Heaven, I want to stay here.” After trying to talk with Lennon quietly about Heaven and how wonderful it will be, and that hopefully, we will all be there someday, she still wasn’t convinced. I then looked at Benjamin and said, “Lennon, Benjamin will be able to walk and breath in Heaven.” That did it. Heaven is definitely OK now and she was very excited. Next came the conversation about who goes first. This is really not something I wanted to get into in the middle of church so my reply was, “Usually Lennon, older people go first.” I thought I had a successful “Mommy moment,” until an elderly couple walked out of church and Lennon announced that “they need to go to Heaven, they are OLD!” FAIL!

Our discussions of Heaven have continued over the past few days, but tonight it was brought back to Benjamin. Benjamin’s speech therapist left three packs of candy for the girls. I told Lennon they could each have one, and we would save the other for later. Lennon agreed, then looked at me with such innocence and said, “Let’s save the last one for when Benjamin goes to Heaven. He will be able to eat it then.” Success! Maybe I didn’t do too bad of a job.

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The First Birthday List of Miracles To Milestones

So what does an awesome one year old do? Well, at one year old, Benjamin is now able to…

1. Smile
2. Cry
3. Blow kisses
4. Blow raspberries (my favorite)
5. Reach toys within an arms length while reclined
4. Shake small toys
6. Clap his hands
7. Wear his passy valve all day
8. Dance with his shoulders and a slight hip thrust 🙂
9. Lick his lips
10. Reach for things covered by his diaper 🙂
11. Growl
12. Coo
13. Slightly turn his head
14. Sit in his wheelchair
15. Hold his head with support at his shoulders for 30 seconds
16. Vocalize when he is mad or happy
17. Wave
18. Activate toys
19. Beat the odds
20. Make hundreds of people fall in love with him without saying a word
21. Strengthen a family and community

I know this year will hold even more wonderful miracles and milestones, but today we celebrate Benjamin and the battles he has fought and won. We enjoyed a small get together with the neighbors, even entertaining Benjamin with a little “Just Dance 3.” As you can tell by his face, Benjamin enjoyed this cupcake much more than the last one.

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Birthday Week

Last Friday began our week of birthday celebrations. I was a little torn on planning a birthday party for Benjamin during cold and flu season, but with hand sanitizer stations at the door, I decided to proceed. A one year old birthday is usually filled with children playing, but now when I think of children playing, I have fear of germs and fear of future hospitalizations during cold, RSV, and flu season. Because of this, Benjamin was surrounded by family and close friends who supported KC and me as well as Benjamin, Isla, and Lennon during such a tough and amazing year. Benjamin was in great spirits to start off the night, but by the time we were ready to sing “Happy Birthday” and have a cupcake, Benjamin was exhausted. We hope for a better performance on his actual birthday tomorrow.

Today, I asked KC what he remembered of a year ago from today. He had little to say, but I remember sitting while having my nails done, counting time between contractions, with nerves that I did not have with Lennon and Isla. On our way to the hospital, we were both a little on edge. Maybe it was because we were running late, then put on hold by the hospital, or maybe it was because we just knew something wasn’t going to go exactly as planned. I think God tries to send us subtle signs to try to prepare us for the future. We arrived at the hospital and patiently waited to be called back. We then moved into our room, tried to get comfortable, sat through contractions, and waited. KC slept comfortably while I stayed up and watched Gotye on VH1 all night. With Lennon and Isla, I slept up until it was time to push, but this time it was different. I had a sense of uneasiness that I didn’t have with the girls. Once again, God was trying to prepare me.

Once Dr. Morris came in that morning, he was ready to break the water and as soon as he did, Benjamin was delivered. Upon delivery, I knew something wasn’t right. There was no cry, and Benjamin was a dusky blue. After what seemed like eternity, they wisked him away to the NICU leaving me behind while nurses tried to convince me everything was OK. I knew things were not OK, and that I might lose my little angel that I had yet to officially meet. After alot of convincing, they allowed me to get into a wheelchair where I was taken upstairs to meet the little guy who would change our lives forever. What took me months to realize was that the nurses were right. Everything was going to be OK, it was actually going to be better than OK. 🙂

From here is where our story began. We have had a year of tears, fear, worry, anxiety, but mostly a year of joy, love, blessings, and family. I not only owe who I am today to Benjamin, but also to how generous, caring, and loving people have been because of this gift we have all been given. During mass this morning, it was wonderful to hear a very close family friend ask for continued progress with Baby Ben. I am not one to speak out in mass, but it was tough not to yell out AMEN!

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Look Mom, No Hands

The past few weeks have been wonderful at the Sirmon house. Benjamin continues to get stronger, Isla’s purse collection is multiplying, and Lennon has been educating us on marriage. “When you find someone you are not friends with, you marry them.” Very interesting. 🙂

We all have been working a little harder with Benjamin’s therapy at home, specifically on his head control. He is starting to turn his head a little in supported positions, and trying to initiate movements forward and back. This is huge for a kiddo who didn’t move for months after birth.

Tonight, KC and I saw another miracle evolve into a milestone. I sat Benjamin in front of me and started working with his head control. While holding, I felt Benjamin move his head away from the support of my hands. With support around his shoulders, Benjamin balanced his head in midline for 25 seconds. I quietly yelled at KC (while he was on an important phone call) with tears in my eyes to grab his attention. Benjamin quickly lost control of his head so I leaned him back and grabbed the camera. 🙂 Hoping for a repeat performance, I started filming and he performed on cue. Benjamin balanced his head once I placed it, and he was able to turn and move his head slightly before losing the control of his head. The past few weeks had definitely given me hope for Benjamin’s head control, but I never expected this so soon. This kid is amazing.

He was also fitted for new braces last week for his feet. Hopefully, we will reveal those next week.

The role of parents (not just parents of kids with different abilities) should be to not only advocate for your child, but also advocate for the children that will follow behind. Wednesday, I went to a Legislative Roundtable hoping to get answers that may help Benjamin and our family, but looking around, I realized that 1. I am not alone and 2. If we don’t speak up for our kids, no one else will. As I shared our story, I realized the people who are making the decisions are not aware of the struggles we face. I was barely able to start before the tears began and my mom had to finish. I don’t get upset over Benjamin’s struggles, I get upset talking about the things I have to fight daily (insurance, support, treatments). So many things go into having a child with special needs, things that stand in the way of spending quality time with Benjamin. I guess my days of avoiding conversation and drowning my thoughts in writing are over. I will continue to write, but it’s time for me to be able to share Benjamin’s story in person. If this helps to make a change in our system, I am all in. My credentials keep growing… From PT/mom to nurse, respiratory therapist, with a little OT/ST, and now advocate. 🙂

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